Re-Doing Patient Experience Through Design-Led Research

This thesis researches and examines how ‘patient experience’ is understood and approached through practice in
healthcare, social science and design. In the UK, there is a considerable effort to access, measure and improve
patient experience in the National Health Service (NHS). It is considered to be something that can be defined and
thus made available for intervention alongside and in ways comparable to measures of clinical effectiveness and
safety.

As such, current approaches to patient experience from healthcare, social science and design will be set
out, identifying different assumptions that figure the patient and patient experience in radically different ways. The
thesis will then go on to use the notion of performativity to show how different methods and techniques – and
their associated rationalities – that aim to capture, measure and improve patient experience actually produce and
enact different versions of patient experience.

The empirical and practice-based element of this research is based with the Barts Multiple Sclerosis (MS)
research team at Queen Mary University of London (QMUL). This team researches MS, a degenerative and
chronic neurological disease affecting over 100,000 people in the UK. Through engaging with the empirical
contexts of an outpatient clinic, a scientific conference and a measurement activity, this research will explore how
patient experience is enacted in different contexts and consider the ways in which patient experience, as
human/non-human arrangements, come into being and is made capable for action/inaction by way of
measurement tools, misbehavior, practices of simulation and different experience phenomena.

This thesis will demonstrate that design-led research offers the opportunity to rethink or redo the patient
experience, drawing on scholars in Science and Technology Studies (STS) to develop a methodological
approach to deal with performativity of method and the multiple enactments of patient experience. Viewing
interventions as performative will disrupt and provoke different forms of knowledge, methods and people, as well
as revealing processes, practices and procedures (or technologies of experience) that articulate patient
experience. These then contribute to the design of three research events where I set out to develop a new
patient-reported outcome measure to produce alternative forms of patient experience. As will become evident,
this aim proved to be misguided, if not impossible; instead, my contribution is a better understanding of the
requirements of a new approach to working with an expanded notion of patient experience. This thesis concludes
by reflecting on the implications of design-led interventions to study different versions of patient experience
alongside expanding on how design researchers can empirically engage with this topic.